TY - JOUR
T1 - Evaluation of a web-based decision aid for couples at risk of transmitting a genetic disease
T2 - a randomized controlled trial
AU - Engbersen-Severijns, Yil
AU - de Die-Smulders, Christine Elisabeth Maria
AU - Bijlsma, Emilia Katharina
AU - Corsten-Janssen, Nicole
AU - Houwink, Elisa Josephine Francisca
AU - Joosten, Sara Johanna Regina
AU - van Kuijk, Sander Martijn Job
AU - Lichtenbelt, Klazina Danette
AU - Ottenheim, Cecilia Petra Elisabeth
AU - Scheepers, Hubertina Catharina Johanna
AU - Stuurman, Kyra Eva
AU - Tan-Sindhunata, Maria Brigita
AU - Van Vliet-Lachotzki, Elsbeth Hennie
AU - de Vries, Hein
AU - van der Weijden, Gertruda Dorothea Emma Maria
AU - van Osch, Liesbeth Anne Dorothé Marie
N1 - Publisher Copyright:
© 2025 The Author(s). Published by Elsevier Ltd on behalf of Reproductive Healthcare Ltd. This is an open access article under the CC BY license. http://creativecommons.org/licenses/by/4.0/
PY - 2026/4
Y1 - 2026/4
N2 - Research question: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)? Design: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information. Results: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1–T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3. Conclusion: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.
AB - Research question: What are the immediate and sustained effects of the decision aid on key elements of informed decision-making (decisional conflict, knowledge, realistic expectations and deliberation) among couples at risk of transmitting a genetic disease to their offspring in a multi-centre randomized controlled trial (RCT)? Design: Effects were assessed with individual questionnaires in a multicentre RCT. The intervention group (n = 98) received access to the decision aid, whereas the (active) control group (n = 106) accessed a standardized information page. Outcomes were measured before use (T0), immediately after use (T1), at 1 (T2) and 6 months (T3) after use of the decision aid or standardized information. Results: Between-group analyses showed significant effects of the decision aid on the informed decisional conflict subscale (T1) but not on overall decisional conflict. Immediately after use (T1), participants in the intervention group scored significantly higher on preparation for decision-making and overall appreciation compared with the control group. Within-group analyses revealed that both the decision aid and the standardized information page decreased decisional conflict and increased knowledge and realistic expectations, across all time points (T1–T3). For the control group, deliberation significantly improved at T1, T2 and T3, whereas, for the intervention group, significant improvements were observed only at T2 and T3. Conclusion: The decision aid outperforms the standardized information page in preparation for decision-making and overall appreciation. Future research should explore how to improve tailoring of information tools to individual characteristics and identify which couples benefit most from concise versus comprehensive information at different decision-making stages.
KW - decision aid
KW - decision support
KW - genetic disease
KW - randomized controlled trial
KW - reproductive decision-making
UR - https://www.scopus.com/pages/publications/105034511986
U2 - 10.1016/j.rbmo.2025.105273
DO - 10.1016/j.rbmo.2025.105273
M3 - Article
C2 - 41720043
AN - SCOPUS:105034511986
SN - 1472-6483
VL - 52
JO - Reproductive Biomedicine Online
JF - Reproductive Biomedicine Online
IS - 4
M1 - 105273
ER -